In 2009 the international patient advocacy group entitled The Hummingbirds' Foundation for M.E. (HFME) was founded, by severe M.E. patient Jodi Bassett. Most HFME contributors are also severely disabled but feel they have no choice but to try to do what they can for M.E. advocacy. There simply is very nearly almost nobody else advocating for M.E. patients currently.
The A Hummingbirds' Guide website features artworks by Australian oil painter and patient advocate Jodi Bassett.
The Health, Healing & Hummingbirds website features information on health and healing for ill people summarised from 100 of the best cutting edge health books.
Caring for the M.E. Patient by Jodi Bassett, with a foreword text by M.E. expert Dr Byron Hyde
What is M.E. by Jodi Bassett, with a foreword text by M.E. expert Dr Byron Hyde
Super Cute, Dreamy, Vicious Cats by Jodi Bassett
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
It can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.
M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’
What defines M.E. is a specific type of acutely acquired damage to the brain (the central nervous system) caused by a virus; an enterovirus. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.
M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis.
M.E. can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. In some cases Myalgic Encephalomyelitis is fatal.
Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive. M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.
Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests. If all tests are normal, then a person does not have M.E.
For more information see What is M.E.? - and other papers and videos - on The Hummingbirds' Foundation for M.E. website.